Carmel Valley Alzheimer's patient on mission to educate others

On a recent morning, one of Monterey County's most respected lawyers strolled across the sunny deck of his Carmel Valley home, his mind awash in memories.

He remembered what a wreck the place was when he fell in love with the property and convinced his wife they could make it beautiful. They did. He pointed out the spot below his gate where he and his boys used to put kayaks into the river and float to the sea. He turned and pointed to the back door of his house, where those same waters rose in 1998. Like a flood, the memories returned.

But Charles Warner is leaving those memories behind, in heartbreaking ways. That afternoon, he and his wife would sign papers turning over their dream home to a new family. They'll move to a smaller place on Carmel Valley Ranch, not to enjoy a golden retirement but to face an all-too-certain future.

A year ago, at the age of 70 and at the pinnacle of his career, "Chuck" Warner was diagnosed with early-stage Alzheimer's. After 46 stellar years in the courtroom, he wants to use what is left of his intellect to educate others about the disease that will slowly eat his brain and kill him.

"I hope to raise public awareness that we're not all just drooling in a corner," he said.

One of his oldest friends, Monterey County Superior Court Judge Tom Wills, praised Warner for finding a new way to carry on his legacy of helping others. Warner has spoken publicly on a number of occasions and written articles for several publications, both locally and nationwide, regarding his disease.

"I think there would be a tendency among a lot of people to hide this," Wills said. "He's taken this head on. He's as upfront about this disease as anyone I've ever seen."

According to a report released last week by the Alzheimer's Association, 1 in 3 Americans dies with dementia. Already, 5.2 million Americans have Alzheimer's or some form of dementia, and that number is expected to jump to 13.8 million by 2050.

It costs about $70,000 a year to care for someone with Alzheimer's. Most patients exhaust their life savings well before the end of their lives, leaving the rest of the cost to Medicare and Medicaid. Many with long-term care insurance will run out of resources to maintain their premiums, or find that when it is needed, the policy doesn't cover Alzheimer's.

Recognizing the crippling economic cost to come, President Barack Obama is seeking increased funding for Alzheimer's research. The Warners hope to encourage philanthropy by sharing their experience.

In some ways, Warner said, he is fortunate. A medical crisis led to a diagnosis when he was still in the early stages, when he could still make decisions about financial planning and end-of-life preferences.

Unfortunately, the medical crisis nearly killed him, left him with other lasting health issues and ushered in an earlier onset of the disease that he would have developed later in life. His mother had Alzheimer's, but she was diagnosed in her early 80s.

In October 2011, an anti-depressant, prescribed after a diagnosis with prostate cancer, caused his blood-sodium level to plunge. Warner became disoriented and fell in his home. At the hospital, his sodium level, normally 135-145 mEq/L, had plummeted to 103, causing swelling in his brain. The doctor told Lisa Warner that he would not make it through the night.

In what doctors have since said was a medical miracle, he did survive, but with lasting brain injury. He returned to work but his staff noticed him repeating phone calls in a matter of minutes, writing the same letter twice.

On Jan. 1, 2012, Warner was to become "of counsel" to one of the nation's top law firms, Cotchett, Pitre & McCarthy LLP. After winning numerous legal honors in Monterey County, it would have been a particularly proud point in his career.

Instead, on Friday, Jan. 13, 2012, after MRIs and cognitive testing, his doctor confirmed a diagnosis he had alluded to weeks earlier. He did not mince words.

"It ruined my day and a nice lunch I'd had in Palo Alto," said Warner, who has retained his wry sense of humor.

Reaching out for help

Like so much will in the future, the task of closing her husband's practice, finding lawyers for his clients and preserving his 45-year legal legacy fell to Lisa.

Now the two of them are bent on helping others find the resources that have helped them so much. They were fortunate enough to be invited to a pilot support group at Stanford, and they attend weekly groups at the Alzheimer's Association in Monterey, both of which have been invaluable.

"I'm not a group person," said Lisa. "But I cannot emphasize enough how important it is to get the help of the Alzheimer's Association.

"Nobody (outside) understands what you're going through, neither the patient nor the family member," she added. "They all say, 'But he looks so normal. Are you sure he has Alzheimer's?'"

In its early stages, the disease is much more than memory loss, though his short-term memory is affected, Warner said. The cognitive difficulties are worse, things like decision-making, simple bookkeeping and completing multi-step tasks.

Suddenly the clothes dryer knobs are complicated beyond his ability. A gourmet chef, he can no longer complete a recipe. His ability to read sheet music at the piano is dwindling. And, yet, he can carry on a conversation without skipping a beat.

He still lunches regularly with some of his friends, including Wills, who said, "He seems like the same old Chuck to me." Others, Warner said, have dropped from sight.

"It's like you have a contagious disease," he said. "A lot of people don't know what to say, so they say nothing at all and that's more painful than even making a mistake." Or they make insensitive jokes. A Google search turns up 1.7 million Alzheimer's jokes that are not funny once you sit in a room with someone who knows he'll be unable to dress himself in a couple of years, Lisa said.

Warner stressed the importance of seeking help immediately after an Alzheimer's diagnosis, and not just for the educational and emotional support. If the disease is not too advanced, after obtaining a doctor-approved "certificate of competency," the patient can complete estate planning, as well as spell out end-of-life preferences.

Sherry Williams, regional director of the Alzheimer's Association, said such planning can be a tremendous blessing for caregivers, many of whom feel guilty for years wondering if they made the best choices for their loved one.

An early diagnosis can also afford the opportunity to participate in research trials, though none was available to Warner because of his prostate cancer.

Warner said he misses his law practice, "really a lot," but keeps busy with speaking engagements, his Alzheimer's support groups and physical therapy following back surgery. (On top of everything else, doctors realized months after his fall that he had broken his back.)

And he spreads the gospel of delaying dementia: "Walk 40 minutes a day and eat salmon three times a week" for its Omega-3 properties, he said.

There are drugs that help with cognition early in the disease's progression. Aricept has brought her husband back from a blank stare, Lisa said. But there is not yet a treatment or cure.

The road ahead for Lisa is long. After downsizing their home and lifestyle, she will have to find an income and hire someone to share the full-time care of her husband.

"In a few years, it will be a gift for him that he doesn't remember," she said.

In the meantime, she hopes to create a nonprofit agency to advocate for early-stage and early-onset Alzheimer's patients, those who are diagnosed before the age of 65. For one thing, she wants to become active in efforts to reduce the age that would trigger law enforcement to issue a "Gray Alert" for a missing adult with dementia, currently set at 65.

"I'm going to be an advocate," she said, "ring the bell, stand on the soap box and see what we can get going."

Everyone misplaces their keys occasionally, but regular memory loss and cognitive difficulties may be a sign of Alzheimer's disease. If you regularly experience one of the following symptoms, contact your doctor. Early diagnosis can help.